DNA samples of Romani people taken to ascertain their ethnic origin were handled unethically and the data was misused
For decades, geneticists have been collecting blood samples from thousands of Romani people and uploading their DNA to public databases. Some of the studies involved claimed their purpose was to learn more about the genetics and the history of the Roma.
The New York Times has published an article on this issue about an editorial in the journal Nature calling for higher ethical standards to apply to the analysis and use of genetic information about Romani people, who live predominantly in Europe. The journal mentions many examples of clear misuse or of dubious ethics in such surveys involving Romani people.
In the editorial, a group of scientists argues that the Roma are the population in Europe to have been most intensively studied over the past 30 years in forensic genetic journals, studies that are fraught with ethical issues and may harm Romani people. For five years, a team of researchers in Germany and the United Kingdom pored over more than 450 papers that used the DNA of Romani people to understand how geneticists and other scholars acquired, interpreted and shared that genetic information.
For example, in 1981, when scientists in Hungary took blood samples from prisoners, they classified them as Romani solely on the basis of their appearance, which the authors of the new study say is an unscientific approach. Studies from the year 2000 about the genetics of Roma still referred to them as “gypsies”, which is considered an abusive term.
“It’s just horrifying,” said Dr. Ethel Brooks, who chairs the department of women’s, gender and sexuality studies at Rutgers University in New Jersey, USA, and who is herself Romani, “but of course, it’s all things we’ve known and suspected.” Such analyses appeared in studies dating as far back as 1921, but most of them have been published during the last 30 years.
Veronika Lipphardt, an historian of science at the University of Freiburg, Germany, said “Many didn’t believe us because it was simply so hard to believe” that such practices were “ongoing.” In the year 2010 the prestigious journal Forensic Science International: Genetics issued its ethical requirements for the research it will publish, including the need for informed consent from the people whose genetic material is used.
A study from 2015 positing an Indian origin for Romani people collected DNA data and uploaded it to two public databases used by criminal justice authorities globally for genetic reference material when solving crimes. Although the data was decades old, its uploading in a public database poses a danger to the community in the present day.
The database is called the Y-STR Haplotype Reference Database, or YHRD. The authors of the editorial in Nature propose that scientists collaborate with Romani people from now on and take an interest in their community’s problems.
Just one study of the 450 studies reviewed mentions community participation by Romani people, including birth specialists, doctors and nurses of Romani origin with the proper educations. Entrenched barriers to education are part of the reason there are fewer Romani scholars, Dr. Brooks noted.
“To really open up space for these kinds of discussions within marginalized communities?” Dr. Brooks said. “It would be a scientific revolution.”
